Families urged to discuss organ donation as more than 200 in Wales await transplant

'I think about my donor everyday', organ donation recipient Ray Sherry tells ITV Wales journalist Katie Fenton


New year can often be a time of reflection. But this year, families are being asked to reflect on and discuss one thing in particular - organ donation.

In 2015, Wales led the way in becoming the first UK to change to an opt out system. England followed in 2020.

This means individuals are required to opt out of donating their organs.

But many are still not aware that families will always be consulted before organ donation goes ahead.

This photo of Ray with extreme jaundice was taken 10 days before his transplant.

So people across Wales are being urged to talk about organ donation and register their decision to help save lives.

Ray Sherry, from Cardiff, was diagnosed with a rare liver disease called Primary Sclerosing Cholangitis (PSC) in 2005.

"I was informed that it was incurable and that eventually I would need a liver transplant," he explained.

"The challenge at the time was they didn't know when, where or how that transplant would come about."

Ray couldn't wait to get back on his bike after the transplant.

He has always lived an active lifestyle, but since the diagnosis, staying fit and healthy has been his only way of managing the disease.

However towards the end of 2020, the keen cyclist's health started to deteriorate and the time came for him to register on the waiting list for a donor.

"I've been dealing with the side effects of PSC for 15-16 years, but only last year, right at the end of what I call my cycling season, I began to get more and more jaundiced."



Other symptoms that affected Ray's quality of life included itchy skin and extreme tiredness.

"Primarily the worst part of having PSC [was] dealing with the irritation of the skin.

"I remember back in 2005, when I was first diagnosed, having to get up in the middle of the night and take cold showers at 2-3 o'clock in the morning, and if I managed to get 3-4 hours sleep then I was very lucky."

In late 2020, Ray received the phone call that a match had been found, and in March 2021 he underwent a liver transplant.

"All of the side effects that I was suffering, and effectively the body giving up, has all gone away, completely gone away," Ray said.

Ray aspires to take on an Ironman triathlon and has previously completed other races.

More than 200 people in Wales are currently waiting for a transplant, and that number is expected to rise.

NHS Blood and Transplant (NHSBT) is calling on families to talk about their decision.

Phil Walton, from NHSBT, said: "Families are always consulted about their loved one's decisions, character, values, beliefs, those sort of things.

"So the families are very central to that conversation when it comes to an end-of-life discussion in the hospital.

"Nine out of 10 families will support an organ donation going ahead if they've had a conversation about that, and I think that's why it's so important to share those decisions, particularly in and around this time when we've got the opportunity to do that."



Ray hopes his story will encourage others to have that conversation.

"[It was] very very life-changing, and for anybody that's sort of thinking about whether they are suitable for being a donor, I would say to them everyone has that ability to create a miracle and save a life.

"I still to this day don't know who my donor is, but I think about my donor every day."

Are you eligible to donate an organ?

Age

According to NHS Blood and Transplant, there is no age limit for becoming an organ donor. 

Parents and guardians can register their children, and children can register themselves.

Children who are under 12 in Scotland and under 18 in the rest of the UK at the time of registration will require their parent or guardian's agreement for donation to take place.

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Medical conditions

Having an illness or medical condition doesn't necessarily prevent a person from becoming an organ or tissue donor.

The decision about whether some or all organs or tissue are suitable for transplant is made by medical specialists at the time of donation, taking into account your medical, travel and social history. 

There are very few conditions where organ donation is ruled out completely. For a list, check the NHS website.

Someone with current active cancer cannot become an organ donor.

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Lifestyle choices

Specialist healthcare professionals decide in each individual case whether a person's organs and tissue are suitable for donation.

It is still possible to become an organ donor if you smoke, and having a tattoo does not prevent you from becoming an organ donor.

Drinking alcohol does not necessarily prevent you from becoming an organ donor, but may affect your ability to donate some organs.

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Ethnicity

The NHS needs donors from all communities and ethnicities.

Blood and tissue types need to match for a transplant to be successful, and organs from donors of the same ethnic background as the recipient are more likely to be a close match.

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Non-blood donors

There may be specific reasons why it has not been possible to donate blood, such as having had a blood transfusion since 1 January 1980.

If you don't or can't give blood you can still be a potential organ donor.

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